Last Thursday, September 12, PPR sent a letter to U.S. Health and Human Services (HHS) Secretary Kathleen Sebelius, urging the immediate implementation of tough new patient privacy protections for digital health records. With privacy now leading the the list of major issues troubling the public in the digital age, PPR believes meaningful and comprehensive data privacy protections are critical components when it comes to restoring patient trust.

In the letter, PPR recommends that HHS:

Allocate 1% of HIE (Health Information Exchange) funding to ensure all patients can choose an “HIE of One” a program that directs all personal data disclosures, which are visible to the patient without restriction or delay.

Mandate portals for patients and physicians and require the use of voluntary patient email addresses be used for Record Locator Services (RLS). With these technologies, every state can easily and inexpensively offer an “HIE of One” to those who want to decide who may use their data.

Require health IT systems to build technology so patients can segment their data for privacy, research, and any other disclosures – allowing patients to decide whether any sensitive data may be used.

Provide funding to build and maintain a complete health data map, a service that allows patients to see and understand data flows across the nation and throughout the world. As present, Americans have no “chain of custody” for personal health data and no way to know who is collecting and using health data.